All blue text has been added as a rebuttal from the Tettos. To read the denial letter without their commentary, click here.
On July 12, 2000, at 10:00 an Informal Conference was held in the Flanders Community Services Office of the Division of Developmental Disabilities. In attendance were Frank and Alycea Tetto and their daughter Maria, the appellants, Rita Kopacz, Maria's home instructor, Roberta Schwartz, an advocate for Maria, from Dawn, Inc.. In attendance from the Division of Developmental Disabilities were Lauren Choclack, Maria's case manager, Mary Giorlando, acting Morris County Supervisor, Wendy Zoccola, acting County Administrator, Morris County, Linda Gately Administrative Practice Officer for The Upper and Northern Regions of the Division and Darlene Yannetta. The Informal Conference was convened to address the appeal of Mr. and Mrs. Tetto, parents and guardian for Maria Tetto. They are appealing Maria's placement on the Non Urgent Community Services Residential Waiting List Status. They are requesting the Maria be placed on the Urgent Residential Waiting List.
The division had an informal conference where no notes were to be kept or records to be submitted. The position outlined by the Division in reference to our position neither accurately reflects our views nor what we communicated to the division.
Mr. and Mrs. Tetto provided the following information: Mr. Tetto stated that Maria should be on the Urgent Waiting List because Maria's disabilities originate from a Traumatic Brain Injury. According to Mr. and Mrs. Tetto, time is a key factor in Maria's rehabilitation. Mr. and Mrs. Tetto stated that in Traumatic Brain Injuries, the first few years after the injury is when therapies are the most beneficial. Mr. and Mrs. Tetto would like Maria to be placed through the Self-determination Program so they could arrange for Maria to receive the therapies now when they feel she would most benefit. They feel that this is what Maria needs most. They stated that she is receiving physical therapy, speech therapy and occupational therapy from the Kessler Institute. On August 17, Maria will start receiving Cognitive Remediation from Headways. Mr. and Mrs. Tetto would like to arrange more therapeutic programs for Maria and would do so if she were able to participate in the Self-determination Program. Mr. and Ms. Tetto are requesting that Maria be placed on the Urgent Residential Waiting List so that Maria will be placed on an initiative in the near future so that she may choose the Self-determination Program.
Mr. and Mrs. Tetto want to hire aides, through the Self-determination Program, that are trained to work with individuals who have traumatic brain injuries. They would like to have some one who will reinforce Maria's therapies. Mr. and Mrs. Tetto feel the home health aide that had worked with Maria was not very helpful because the aide was primarily Spanish speaking so it was difficult for Maria to communicate. Maria communicates by pointing at letters and spelling out words, the aide had difficulty reading English, so the home health aide did not understand Maria when she tried to give the aide instructions for her care. Another problem the Tetto's reported was that the current aide was too short to help Maria transfer. She could not position herself correctly to help with Maria's transfers.
This meant that Mr. or Mrs. Tetto had to be present at all times when Maria needed to be transferred. Mr. and Mrs. Tetto feel that home health aides that are not trained for working with people with Traumatic Brain Injuries can not meet Maria's needs. So Mr. and Mrs. Tetto feel that they must provide Maria's care, exclusively.
Maria requires care and supervision 24 hours seven days per week. Maria requires specialized care because she suffered a severe brain injury that left her with multiple cognitive and physical deficits that are well documented in her medical records. The DDD has not been able to provide the family with the services needed for Maria to make both quantitative and qualitative gains in her recovery or with recreational opportunities to enhance her quality of life.
Mr. and Mrs. Tetto stated that the current level of care that they provide for Maria causes them to suffer physical and mental pain. Mr. Tetto said that when he assists in Maria's transfers he aggravates a back injury, causing pain to radiate down his back and through his legs. Mrs. Tetto says that she is suffering from exhaustion from Maria's need for constant care. Mr. and Mrs. Tetto both report depression. Mr. Tetto said that he is depressed because he can't go to work due to Maria's need for care. Mr. Tetto says neither he nor his wife sleep well due to the need to care for Maria during the night.
Mr. and Mrs. Tetto stated that the current situation is hurting their entire family. They stated that they have four other children and they are neglecting the other children due to the amount of time they spend caring for Maria. They feel if they had trained aides that could care for people with Traumatic Brain Injuries that they would be able to let someone else care for Maria and this would give them time to spend with the rest of their children and get some rest.
Mr. and Mrs. Tetto expressed the opinion that the Division of Developmental Disabilities is discriminating against age because the Division allows children of people over 55 years old to be admitted to the Urgent Residential Waiting List and will not allow Maria, because they are under 55 years old.
The stress reported is due to a lack of services for Maria and others like her. Who would not find it stressful to know that their child's potential for recovery is being jeopardized because of denial of services? Our medical history as her parents should have no bearing on what services Maria needs nor should any family have to provide confidential medical information on anyone but the individual for whom services are being sought. Mr. Tetto has had a chronic back condition since an auto accident in 1983. We have 4 other children at home in addition to Maria. Mr. Tetto has not sought employment since Maria's accident. Mrs. Tetto has taken 2 non-paid family care leave of absences since Maria's accident on 3-2-98 and currently works part time 20 hours per week to insure that Maria's basic needs are met. We want assistance to insure a good recovery and maximum independence for Maria. We have no intention of ever letting someone else care for Maria. We seek specialized help which the DDD, through its' current offerings to us, is not fully capable of providing.
Mr. and Mrs. Tetto's position can be summarized as follows:
Mr. and Mrs. Tetto want Maria to be on the Residential Urgent Waiting List because she has a Traumatic Brain Injury. They state that her recovery will be more extensive if she receives an intensified therapeutic program now, rather than later. They want to provide this program with Self-determination funding. They want aides that are trained in working with people with traumatic brain injuries to care for Maria, so that Maria's therapies will be reinforced. Mr. and Mrs. Tetto stated that the level of care that they provide Maria leaves them exhausted, depressed and in physical pain. They say that their other four children are being neglected because they have no time for them due to the time needed for Maria's care. Mr. and Mrs. Tetto state that the Division of Developmental Disabilities is discriminating against them because they are under 55 years old.
Maria is placed at risk if she is not able to receive cognitive and therapeutic interventions simply because she or her parents do not meet some arbitrary, flawed, and discriminatory criteria that does not address her needs but denies her services simply because of age. We believe Maria will be able to better communicate if she has help that can read and speak English and engage her in conversation. Why is that so difficult for DDD to understand? We believe Maria will be able to make gains in ambulation if we can have her participate in therapeutic programs such as aquatherapy, hippotherapy, exercise physiology, or simply have trained assistants that can continue her therapeutic programs at home as part of her daily activities. Why is it difficult for DDD to understand that muscles weaken or contract when not exercised or stretched?
The criterion for qualifying for community-based programs is deeply flawed, results in discrimination of disabled children and fails to acknowledge the disabled as persons in their own right. The family never took the position that discrimination in program eligibility was directed at the parents. Quite the contrary; we emphasized that the criteria for services to the disabled should be needs based. The needs we emphasized were not the needs of the parents/caregivers, but the needs of the disabled individual.
Wendy Zoccola, Mary Giorlando and Darlene Yannetta presented the Division's position. They said that Maria does not meet the criteria for placement on the urgent waiting list. Her parents are under 55 years old, there is no risk of abuse, neglect or exploitation, and Maria's physical care and medical needs can be met with specialized support arranged and provided by the Division.
The Division has arranged for Maria to receive Medicaid through the Children's Medicaid Waiver. They said that the Adaptive Device Program was explained and offered to Mr. and Mrs. Tetto and that Maria currently does not need any adaptive devices. The case manager has been helping Mr. and Mrs. Tetto look for a Home Health Aide.
The Division's position can be summarized as follows:
The Division of Developmental Disabilities is attempting to provide specialized supports for Maria. They have arranged for Maria to receive Medicaid under the Children's Waiver, they have offered assistance with adaptive devices and are attempting to place an aide in Maria's home to assist her with activities of daily living. Maria's parents are under the age of 55 there is no risk of abuse neglect or exploitation, and Maria's physical care and medical needs are being met.
We seek help to meet our daughter's needs. What does our age have to do with Maria's needs to develop communication skills, learn to maximize her independence, learn to do her own personal care or learn to ambulate? Do parents have to abuse/neglect their disabled children to obtain needed services? Yes, due to exhaustion and Maria's need to be engaged during non-sleep hours, there is a real risk of neglect of everyone's needs, especially Maria's. The division has not provided any specialized supports. They have provided a stipend for which we can apply every 2 years, but that has not even paid for the ramp yet.
Maria did qualify for the Medicaid Waiver, but has not received any services under the Medicaid Waiver program due to unavailability of home health aides. And it took us several months just to get the DDD to explain to us how to request these services. The adaptive program was mentioned to the family recently, but had never been fully explained to the family. Maria has many needs for adaptive devices. In order not to waste limited taxpayer dollars the family wants assistance in determining what devices can best meet Maria's needs. The family has in the past purchased a Link (augmentive communication device), a Chi Machine, and Therapy balls at their expense because they were not aware of the adaptive device program. We are currently in the process of purchasing a pedal wheelchair and an exercise machine for Maria. We were also just recently informed that before the DDD can proceed with providing adaptive devices, we must go through the process of having Medicaid deny the request. However, we were not given any instruction on how to apply to Medicaid for these devices.
DDD has been promising to work on obtaining aide services for Maria beyond respite care since before the new year. To date, no aide has been found by DDD or the family. When the respite care worker has not been able to provide scheduled services, no replacement has been found. Further, the family had informed DDD of a program sponsored by United Cerebral Palsy to permit families to hire care workers in the event DDD is unable to provide the service. Despite the existence of such a program, DDD had failed to provide the family with the documents needed to apply for said program. We have just now found out that the waiting list has over 250 families and DDD has finally added us to the list.
Mr. and Mrs. Tetto contend that their daughter Maria should be placed on the Residential Urgent Waiting list because her need for specialized therapies and specially trained aides to help in her rehabilitation is immediate. They would use Self-determination funding to provide for the therapies. They have stated that Maria's need for constant care is draining ·them both physically and mentally. Mr. and Mrs. Tetto contend that the Division of Developmental Disabilities is discriminating against because of their age. For the above stated reasons Mr. and Mrs. Tetto are appealing Maria's placement on the Non-Urgent Residential waiting list.
To grant Mr. and Mrs. Tetto's appeal would be arbitrary and contrary to Administrative Code, N.J.A.C.10:46C-1.4 (the Administrative Code that addresses Waiting List Assignment) that states "The urgent Category will be assigned when the individual is in need of placement because he or she is determined to be at significant risk". The code establishes criteria that create a presumption of when an individual is at significant risk. (Please refer to N.J.A.C. 10:46(3-1.4, iii for the criteria.) None of the criteria applies to Maria. Both of Maria's parents are under 55 years old. There is no reported risk of abuse, neglect or exploitation. Although both parents express some physical and mental stress, from taking care of Maria, they are able to care for her. In fact Maria's level of care, as described by Mr. and Mrs. Tetto, seems to be very good. She is currently receiving physical, speech and occupational therapy. Maria's parents are taking care of her medical needs. Maria does not seem to be at significant risk as defined by N.J.AC 10:46(3-1.4. The Division acted appropriately in assigning Maria to the Non Urgent Residential Waiting List.
Mr. and Mrs. Tetto's request for Maria to be assigned to the Urgent Residential Waiting list is denied. Maria Tetto will remain on the Non Urgent waiting list until the time she meets the Urgent Residential Waiting List Criteria.
Maria needs 24/7 care today. Maria can benefit from an individualized care plan today. Maria's potential to communicate, become more independent, perform her own ADL's or maximize recovery are placed at risk without proper supports today. The parents are not 55. Dad is 52; Mom is 45. Does Dad have to divorce Mom to move Maria up on the waiting list, for services she needs today, by 7 years? Do we have to abuse our daughter to get her the help she needs today? Are we liars? Did we report non-existent stress, non-existent physical pain? Is it not normal to suffer stress from a devastating injury to a child? Is it not stressful to face an uncertain future for a child who, prior to her injury, had a very promising future? Is it not stressful to see the financial security of a family wiped out because Mom and Dad are not able to work without putting Maria even further at risk? Is it not stressful to see a lifetime of savings for college, rainy days and retirement disappear because private insurance and government programs deny needed services to families facing catastrophic illness and injury? Did Mr. Tetto have back surgery more than a dozen years ago to one day use it as a reason to qualify for services for his injured daughter?
There are only two things that are arbitrary and flawed:
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Additional commentary by the Tettos:
We have requested a copy of N.J.AC10:46(3-1.4.) It is our contention that despite the flawed criteria, Maria does meet the criteria to be placed on The Urgent Waiting List. We also believe that in case of Trauma where it is clear and obvious that an individual is going to face a lifetime of disability that enrollment for services should be automatic. We further believe that when we registered Maria for DDD in 1998 and asked for information on support services to assist with her recovery and expedite her return home, the DDD should have enrolled Maria on the waiting list rather than not even telling us that it existed. We further believe that had DDD acted in good faith, Maria may have been able to return home sooner and be further along in her recovery. In closing, we want self determination for Maria to maximize her potential for independence, give Maria opportunities for a better quality life, and provide Maria with opportunities to participate in community activities. Most importantly, we hope to give Maria a chance to outlive Mom and Dad. Without proper supports, Maria may not live to see mom's 55th birthday.
The State of NJ has several programs for disabled persons over 18. The State Office on Disability Services describes the "Self Determination Programs" as follows:
The disabled individual over 18 is able:
The purpose is to provide assistance to disabled individuals to enable them to be active and live independently, to become employed, attend school or vocational training or to support community-based living."
Why the discrimination against Disabled Children and their families? Why are disabled children not included in the eligibility criteria? Why do the politics of inclusion, not include, our most vulnerable citizens, disabled children?
After reviewing the DDD position and Maria's family position, please respond with your views on the information presented. Our hope is not only in obtaining needed services for Maria but to help in bringing about systemic change to make it easier for others facing similar challenges to obtain needed services.
Our mantra is simple: Services for the disabled must be needs based!